Local boy enlists Santa in awareness campaign

In October, 6-year-old Josh Campbell took to the streets of Williamsburg to spread awareness of the rare form of epilepsy he was diagnosed with. With two weeks left until Christmas, he has enlisted Santa's help to take the campaign to social media.

Josh has Electrical Status Epilepticus during Sleep (ESES). Those with the disorder suffer from seizures while they sleep. The disorder, if left untreated, can cause the child to regress cognitively and could begin showing symptoms of autism.

Josh's mom, Vinez Campbell, is bringing the awareness campaign to Facebook, where she started a video challenge akin to the Amyotrophic Lateral Sclerosis, also known as Lou Gehrig's disease, ice bucket challenge that swept social media in 2014.

Her challenge is for children around the world to "sing and play." It's part of a fund-raising campaign called Sing and Play 4 Kids, which benefits Boston Children's Hospital.

"The kids with ESES and epilepsy are just like any other kid, they want to sing and play, too," Vinez Campbell said. "We want to make sure they don't feel so alone this holiday season."

That's where Santa comes in.

Vinez Campbell took Josh to meet with the man himself (portrayed by Williamsburg resident Jim Brennan) at the Yankee Candle on Richmond Road Dec. 7.

It wasn't his first meeting with Santa, but Josh was nervous. He wouldn't sit on the jolly fellow's lap, only stand beside him while they talked transformers toys and fishing poles — both on Josh's wish list. Then Santa was challenged to do his own video for kids around the world with ESES.

"I challenge all the children of the world ... to join me in the challenge to send a message to all the kids living with ESES," Brennan said to the camera.

Vinez Campbell said the idea was to spread awareness of ESES and get other children to create their own video messages of them singing or playing, to be shared with kids who have the disorder. Then they are supposed to challenge other people to create a video, creating a social media chain of happy holiday videos.

Just like with the ALS challenge, people have the option to donate to the Boston Children's Hospital to further research into treatment of the disorder. Close to $115 million was donated over the course of that campaign, according to the ALS Association.

Josh said he had fun talking with Santa. As for what he though about Santa sending a message to all the children like him, all he could do was smile and say, "Yay."

Williams can be reached by phone at 757-345-2341.

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